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Dennis, Dach and Miss P I think the best thing to do here is to is to put each other on ignore or just don't respond to each other any more in this thread, the back and forth arguments and personal attacks are going nowhere..and lets face it you guys are never going to agree on this.

To be honest I don't think anyone is going to agree 100% on what they believe an LTS is...if the rest of you want to continue to debate and discuss that's fine but please try not to get personal or start with the name calling...this applies to everyone who decides to post in this thread...I know how frustrating some of you get but please try and keep it in check.

I would respectfully suggest that Long Term Survivors be defined as anyone diagnosed with HIV or AIDS prior to 1996 when first generation protease inhibitors became available. Those of us diagnosed before the advent of effective treatments will always view HIV very differently than someone diagnosed today, put on a once daily regimen, and told to return in six months for follow-up.

People diagnosed with any stage of HIV disease today will never be treated as the "walking dead" the way we were. After my AIDS diagnosis in 1993, no one, and I mean no one, believed that I was going to live to be 25. (I was 21 at the time.)

Nor will people diagnosed after 1996 have to endure watching their friends, neighbors, fellow AIDS activists, and support group, if any, waste away, develop cancers and OIs that most doctors have never heard of, and die.

Nor will someone diagnosed today likely turn into a walking skeleton like I slowly did, and have to go for chemotherapy surrounded by other walking skeletons being given infusions to treat their going blind from CMV or mad from systemic Kaposi's sarcoma lesions.

Nor will they have to take some of the truly awful antivirals that first came out, such as AZT monotherapy, liquid Norvir, original formula ddI, or ddC. I remember taking AZT and, several meds later, took Crixivan, delavirdine, and acyclovir three times a day on an empty stomach and 3TC twice daily with or without food. My Crixivan/delavirdine/3TC regimen was later augmented with Viread, which had to be taken WITH food. The whole time, I was also on numerous other medications (e.g., calcium supplements) which could not be taken with any of those, resulting on my entire day revolving around my meds. I managed to do take t.i.d Crixivan from 1996-2006.

Someone who is diagnosed today, or even in 2000, and put on a benign once or twice daily regimen, and told they can keep working and living a normal life, will never understand how being a person with AIDS rapidly became one's whole identity.

By the way, the name of the flight attendant was Andre' Dugat, although I probably mispelled his name.

Just for the record, his name was Gaetan Dugas.

And " Patient Zero" was not a nickname. It was how Dugas was so designated in the Los Angeles Cluster Study conducted by Dr. Bill Darrow, of the Centers for Disease Control. It is correct epidemiological usage. Darrow had established sexual links--via complicated diagrams of circles and arrows--between 40 patients in 9 cities. At the center of the cluster diagram was Dugas. At least 40 of the first 248 gay men diagnosed with GRID (as it was then called) in the U.S., as of April 12, 1982, either had had sex with Dugas or had had sex with someone who had. This cluster epidemiological study was the first to prove that GRID/HIV/AIDS was transmissible via sex and was the work of a single (then unknown) infectious agent.

And now...back to our regularly scheduled program.

Logged

"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

I would respectfully suggest that Long Term Survivors be defined as anyone diagnosed with HIV or AIDS prior to 1996 when first generation protease inhibitors became available. Those of us diagnosed before the advent of effective treatments will always view HIV very differently than someone diagnosed today, put on a once daily regimen, and told to return in six months for follow-up.

People diagnosed with any stage of HIV disease today will never be treated as the "walking dead" the way we were. After my AIDS diagnosis in 1993, no one, and I mean no one, believed that I was going to live to be 25. (I was 21 at the time.)

Nor will people diagnosed after 1996 have to endure watching their friends, neighbors, fellow AIDS activists, and support group, if any, waste away, develop cancers and OIs that most doctors have never heard of, and die.

Nor will someone diagnosed today likely turn into a walking skeleton like I slowly did, and have to go for chemotherapy surrounded by other walking skeletons being given infusions to treat their going blind from CMV or mad from systemic Kaposi's sarcoma lesions.

Nor will they have to take some of the truly awful antivirals that first came out, such as AZT monotherapy, liquid Norvir, original formula ddI, or ddC. I remember taking AZT and, several meds later, took Crixivan, delavirdine, and acyclovir three times a day on an empty stomach and 3TC twice daily with or without food. My Crixivan/delavirdine/3TC regimen was later augmented with Viread, which had to be taken WITH food. The whole time, I was also on numerous other medications (e.g., calcium supplements) which could not be taken with any of those, resulting on my entire day revolving around my meds. I managed to do take t.i.d Crixivan from 1996-2006.

Someone who is diagnosed today, or even in 2000, and put on a benign once or twice daily regimen, and told they can keep working and living a normal life, will never understand how being a person with AIDS rapidly became one's whole identity.

This is how you help your fellow LTS's who experienced similar events. And this is how you help the newly diagnosed, or those like myself, understand and respect your struggles in a way that doesn't turn them off.

Firstly, I don't come to the LTS forum to help others LTSers get over our shared past but try to find help and or give help to the new crap that I/we are now going through because of having lived with this virus for a prolonged time.

Secondly, and for me more importantly and the reason I highlighted your comment is that I come to the LTS forum so that I don't have to hear that talking about my esophageal stricture, hole in my stomach from my feeding tube, my rotting teeth, my painful PN or a whole host of other problems are "turning someone off". That remark was extremely offensive and insensitive. It is remarks like that have turned me away from the LWH forum and why I mainly post in the LTS forum.

If reading about my struggles turns you off, I kindly suggest you don't read them.

AA

« Last Edit: November 23, 2009, 03:59:51 AM by AndyArrow »

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It is not the arrival that matters. It is the journey along the way. -- Michel Montaigne

Firstly, I don't come to the LTS forum to help others LTSers get over our shared past but try to find help and or give help to the new crap that I/we are now going through because of having lived with this virus for a prolonged time.

Let me see if I understand. You don't come to the LTS forum to help other LTSs, but you try to find help or give help?

Secondly, and for me more importantly and the reason I highlighted your comment is that I come to the LTS forum so that I don't have to hear that talking about my esophageal stricture, hole in my stomach from my feeding tube, my rotting teeth, my painful PN or a whole host of other problems are "turning someone off". That remark was extremely offensive and insensitive. It is remarks like that have turned me away from the LWH forum and why I mainly post in the LTS forum.

If reading about my struggles turns you off, I kindly suggest you don't read them.

AA

This is a perfect example of taking someone's words out of context. It's also a bit dramatic. I didn't realize comments like that ran rampant in the Living With Forum.

Since I've managed to upset the entire LTS community, at least here on AM, let me go on to say that since the LTS forum has been opened, I see very few threads started for the sole purpose you state you need here.

In fact, when I read through the LTS thread, I see a remarkable similarity to that of the Living With forums. To go even further, I think almost every thread started in the LTS (with the exception of a handful) would fit in very well with the Living With forums since they are not ONLY related to LTS. Here are some example topics on the first page alone of the LTS forum...H1N1, higher education, Truvada and Insentress, every other day dosing, no life insurance, best places to chat online, Gabapentin, bactrim...The list goes on and on. Point is, these topics are not "unique" to LTSs.

Another member proposed a new welcome thread. In it he states "This forum is a result of LTS members, asking for a place to discuss issues, that are unique to those who lived thought the initial decades of HIV." Where are these threads in the LTS forum that discuss these "unique" issues.

Now, I know some of you will go on to say I'm being insensitive. Let me stop you right there! It's not being insensitive, it's just an observation.

Let me see if I understand. You don't come to the LTS forum to help other LTSs, but you try to find help or give help?

Thank you for making my point.

This is a perfect example of taking someone's words out of context. It's also a bit dramatic. I didn't realize comments like that ran rampant in the Living With Forum.

Since I've managed to upset the entire LTS community, at least here on AM, let me go on to say that since the LTS forum has been opened, I see very few threads started for the sole purpose you state you need here.

In fact, when I read through the LTS thread, I see a remarkable similarity to that of the Living With forums. To go even further, I think almost every thread started in the LTS (with the exception of a handful) would fit in very well with the Living With forums since they are not ONLY related to LTS. Here are some example topics on the first page alone of the LTS forum...H1N1, higher education, Truvada and Insentress, every other day dosing, no life insurance, best places to chat online, Gabapentin, bactrim...The list goes on and on. Point is, these topics are not "unique" to LTSs.

Another member proposed a new welcome thread. In it he states "This forum is a result of LTS members, asking for a place to discuss issues, that are unique to those who lived thought the initial decades of HIV." Where are these threads in the LTS forum that discuss these "unique" issues.

Now, I know some of you will go on to say I'm being insensitive. Let me stop you right there! It's not being insensitive, it's just an observation.

It's obvious from the replies you continue to receive that you don't have the sycophantic following you enjoy in AMG. Telling, that not one single LTS has posted in your defense. Telling, that up to this point you have never posted in LTS. Revealing of your character. This isn't AMG where you can throw one of your hissy fits and quit. If you don't think the LTS forum is necessary then don't post here. However your disdain will be met with pushback. You're not a LTS by any stretch of the imagination.

It's obvious from the replies you continue to receive that you don't have the sycophantic following you enjoy in AMG. Telling, that not one single LTS has posted in your defense. Telling, that up to this point you have never posted in LTS. Revealing of your character. This isn't AMG where you can throw one of your hissy fits and quit. If you don't think the LTS forum is necessary then don't post here. However your disdain will be met with pushback. You're not a LTS by any stretch of the imagination.

Please don't attempt to bully me. I've had HIV/AIDS for almost 20 years. It's take a bit more than a few people trying to speak for the entire HIV/AIDS community to back me down.

Please don't attempt to bully me. I've had HIV/AIDS for almost 20 years. It's take a bit more than a few people trying to speak for the entire HIV/AIDS community to back me down.

Whatever. One thing your silly research link failed to include was the ability of a LTS to recognize bullshit. Your sole reason when you waddled in here was to try and settle the score for one of your sychophantic girlfriends who got her panties in a wad.

I started a topic here once about Bactrim . The reason I started it in LTS section is because my question was unique and meant only to be considered by members like myself that had been on Bactrim for 25 years and then discontinued it when our numbers got better .

, higher education, Truvada and Insentress, every other day dosing, no life insurance, best places to chat online, Gabapentin, bactrim...The list goes on and on. Point is, these topics are not "unique" to LTSs.

This is not true, that these problems aren't "unique" to LTS'ers. Those of us, who have had to go through the dark ages of medications, and our bodies deteriorating because of long-term infection, would like information from others who can understand these issues. Sometimes we have more fear than the newer-diagnosed because of what we've been through. Some of us don't work, and need to know how we're going to be able to pay for our burial. Some of us need to discuss the use of Gabapentin to treat our severe PN. The list goes on. Obviously you've never dealt with any of these issues yourself, for years like some of us have, or you wouldn't make such an assinine remark. Dachs was right. This isn't the AMG forum, where people put up with your continuing issues. And you never post here except to stir up trouble. I've never seen one thread you've posted in in support of another member, or to offer help. It's very irritating, frankly.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I will be honest, I am so frustrated with some of the comments here, about what constitutes being a LTS. It is darn near impossible to quantify, in a short concise manner, what it means to be a LTS. How do we condense decades, of some of the most horrific things you could imagine, into mere words? How do we convey, to those who are not LTS, why we need a very special place to call our own. Maybe this will help.

It has been suggested that Long Term Survivor, means just that, survivor, not a victim and certainly not a martyr. I must strongly disagree, because every day I am a victim and a survivor. While I speak as a survivor, every day I experience the loss of decades. I so want dinner parties, with people my age and then I stop, and remember, they are all dead. Daily, I find myself a victim, to a virus that continues to ravage my body, mind and spirit. I am a victim, each and every time one of my medications fails me. I am a victim, when I mourn all that I have lost and I still feel guilty that I survived. As I progress in years, I fall victim to health issues that are increasingly difficult to manage and I no longer fear death, as I now see it as another option to the life I am forced to live.

I survive, because I had the best teachers in the world. My friends and loved ones, who are gone, are where I learned how to fight the virus and to never give up control of your own destiny. I survive, because I learned how to wall off the utter horror, of that first decade and to channel my pain into advocating for others. I survive, in part, because I am just too stubborn to die, especially from some stinking virus. I survive, in hopes of finding a medical regime, that would allow me a moderate quality of life. I survive, as a testament to those who went before me, to remind the world of the true horrors of HIV. I survive, by creating positive power, through helping others.

I survive, in part, because of this very forum. This is the forum, where I recently described my horrible dreams and waking episodes of such horror, with hope that someone could help me. Due to the audience here, I did not need to say much, about what I was experiencing, until many of you commented, both tenderly and knowingly. For me, it is that connection, that shared sense of experience, that defines a LTS. Call it a generational thing, fine, but the fact remains, that LTS have lived and survived the first decades of HIV, and you cannot impart those experiences on the more recently infected.

One of the first things I tell a newly infected person, is the idea that sometimes in life, for things that really matter, it is good to be selfish. For me, this is one of those times. I want the LTS forum to contain posts from LTS, to other LTS. While I realize that I have always advocated that this forum be open, for posting by all members, the situation has changed and as such, I support altering the welcome thread.

What it all comes down to for me, is I need a place, where I can make a simple post and get the help I need, without having to explain myself or my feelings. The reason I need this place, is because, given my fragile mental health, a short post is often, all I can manage. There are valid reasons for restricting this forum to posts from LTS only, and just as this forum was created by and for LTS, there should be no reason why our simple request should not be considered.

Joe, all of what you stated above I understand and respect. However, other than losing a fortitude of friends to HIV, how do your feelings differ any different than mine? They don't.

Although I have not lost friends and family to AIDS, this makes me no less a LTS. The fact that my experiences with HIV/AIDS differ than yours, makes me no less a LTS.

My objection is not to discontinue a forum of this type. What I do object to is someone telling me my fears and experiences are any less than real just because they don't compare to their level of fear or experiences.

I've lived with this virus for almost 20 years with very few complications. As I mentioned previosly, this may be due to choices I've made, choices others have made, and some plain old good luck. This isn't bragging. In fact, I'm extremely thankful. However, it still makes me no less a LTS than anyone here.

Whatever. One thing your silly research link failed to include was the ability of a LTS to recognize bullshit. Your sole reason when you waddled in here was to try and settle the score for one of your sychophantic girlfriends who got her panties in a wad.

Due you even understand the definition of the term sychopantic? I reckon not, as it makes absolutely no sense in the context of this thread. And please pray tell who my sychophantic girlfriend is "who got her panties in a wad."

Dennis, Dach I think the best thing to do here is to is to put each other on ignore or just don't respond to each other any more in this thread, the back and forth arguments and personal attacks are going nowhere..and lets face it you guys are never going to agree on this.

Keep it civil guys.

HugsJan

Ok guys what part of this did you not understand...please stop this now, it's going no where...thank you for your cooperation.

One of the first things I tell a newly infected person, is the idea that sometimes in life, for things that really matter, it is good to be selfish. For me, this is one of those times. I want the LTS forum to contain posts from LTS, to other LTS. While I realize that I have always advocated that this forum be open, for posting by all members, the situation has changed and as such, I support altering the welcome thread.

Oct. 3rd, 1991, here! And killfoile, you're one of the first POZ stars that I gravitated to when I first began My Journey... I can live with, understand and support that our Forum be open to All -to come in, pick our brains, learn our history and hopefully feel embraced and included within the entire HIVe (CommUNITY), only we can post to each other in it...

Prejudices, it is well known, are most difficult to eradicate from the heart whose soil has never been loosened or fertilized by education; they grow there, firm as weeds along rocks.- Charlotte Bronte

"When dealing with people, let us remember we are notdealing with creatures of logic. We are dealing withcreatures of emotion, creatures bristling with prejudicesand motivated by pride and vanity." Ė Dale Carnegie

Thanks for allowing me to share my Journey with y'all.

Best Regards, Michael

"I used to be afraid of dying, but I'm not anymore.I'm more afraid of what happens to the people who live..."from "And The Band Played On"

"If liberty means anything at all,it means the right to tell people what they do not want to hear."George Orwell

I've lived with this virus for almost 20 years with very few complications. As I mentioned previosly, this may be due to choices I've made, choices others have made, and some plain old good luck. This isn't bragging. In fact, I'm extremely thankful. However, it still makes me no less a LTS than anyone here.

Uh, having 2 t-cells sure ain't "nothing" as far as I've heard. I'd not know since I've never dipped that far down, but then I go to the doctor regularly.

Let me see if I understand. You don't come to the LTS forum to help other LTSs, but you try to find help or give help?

Thank you for making my point.

This is a perfect example of taking someone's words out of context. It's also a bit dramatic. I didn't realize comments like that ran rampant in the Living With Forum.

Since I've managed to upset the entire LTS community, at least here on AM, let me go on to say that since the LTS forum has been opened, I see very few threads started for the sole purpose you state you need here.

In fact, when I read through the LTS thread, I see a remarkable similarity to that of the Living With forums. To go even further, I think almost every thread started in the LTS (with the exception of a handful) would fit in very well with the Living With forums since they are not ONLY related to LTS. Here are some example topics on the first page alone of the LTS forum...H1N1, higher education, Truvada and Insentress, every other day dosing, no life insurance, best places to chat online, Gabapentin, bactrim...The list goes on and on. Point is, these topics are not "unique" to LTSs.

Another member proposed a new welcome thread. In it he states "This forum is a result of LTS members, asking for a place to discuss issues, that are unique to those who lived thought the initial decades of HIV." Where are these threads in the LTS forum that discuss these "unique" issues.

Now, I know some of you will go on to say I'm being insensitive. Let me stop you right there! It's not being insensitive, it's just an observation.

No! You will not stop me right there. I used a direct quote of yours saying that the struggles of LTSers can "turn off" you or those newly diagnosed. You then went on to say that those comments don't "run rampant in the LWH and you are right they don't ... but they exist there ... they don't exist here.

Again I say that your comment was offensive and insensitive and I ask the mods to give you a time out unless you apologize.

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It is not the arrival that matters. It is the journey along the way. -- Michel Montaigne

No! You will not stop me right there. I used a direct quote of yours saying that the struggles of LTSers can "turn off" you or those newly diagnosed. You then went on to say that those comments don't "run rampant in the LWH and you are right they don't ... but they exist there ... they don't exist here.

Again I say that your comment was offensive and insensitive and I ask the mods to give you a time out unless you apologize.

Actually I know absolutely nothing about your experiences as a LTS. Zilch. The only thing I know about you are the endless travails of Carol Ann, etc.

If it's got anything to do with drama here in the forums you're right up on it. I'll give you that. So far, my book, Carol Ann, and AMG has made it into a thread regarding the definition of LTS. What's next?

I will apologige if my opinion may have offended you. However, I will not apologige for having an opinion of my own.

When I post about ongoing medical problems I have or have had due to horrible meds I have taken in the past or simply long term effects of the virus itself people in the LTS forum aren't "turned off" they offer help/understanding/sympathy.

I do not / did not wish you to apologize for your opinion. I wanted you to apologize for your words which were offensive and insensitive. Since, you can't seem to comprehend that what you said was hurtful I shall have no further dealing with you on this topic.

« Last Edit: November 23, 2009, 06:32:04 PM by AndyArrow »

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It is not the arrival that matters. It is the journey along the way. -- Michel Montaigne

What I do object to is someone telling me my fears and experiences are any less than real just because they don't compare to their level of fear or experiences.

you're the one who swaggered into the room first accusing people of quibbling, then being victims, then dwelling in the past. At first you had the temerity to brag about how your experience with HIV wasn't so bad; but then you got all mad when others pointed that your un-traumatic past then doesn't qualify you to cast aspersions on the rest of us.

I will apologige if my opinion may have offended you. However, I will not apologige for having an opinion of my own.

I don't want you to apologize for your opinion; but I would like you to apologize for being a rude insensitive boob. And then I would like you to quit posting for a while, so I can believe your, (what would this be?) your third apology actually meant something. (and using spellcheck would be nice too. besides it'll slow down your responses and give you some time to think about what you're posting)

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I'm going to ask you to step away from this thread, it seems all you are doing is upsetting everyone, so please stop this now..Please consider this a warning

Please don't come back telling me you have a right to your opinion, I don't need you to tell me that..but when your opinion is hurting people then I will step in and put a stop to it, and if that means giving you a TO then that's what I will do...so please no more posts...thank you for your cooperation.

Please read the other post, by me, on proposed change to welcome thread. This whole discussion centered on who could post in this forum and the only criteria was you tested poz before HAART. You tested in 1993, so you are a certifiable dinosaur, just like the rest of us.

Nancy; as Joe and Jan have said, you certainly qualify to join the conversation in this fourm! In fact seeing your posts here have really made my day, and I hope you stick around and let us know how things are for you and yours.

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

having been diagnosed hiv+ in 1991 and AIDS in 2001, having suffered several oi's and been in the hospital multiple times due to the side affects of long term taking of these meds, you guys know what I'm talking about I'm sure. i would classify ltrs as people at the least 10 years or more. we've all had our own personal battles to fight and it would be nice to have a forum just for us. just my humble opinion.

A long term survivor is anyone who personally remembers Ron and Nancy Reagan... history books don't count.

I know this would be more work for the Mods but this forum seems like a great reason to implement SMF Member Groups, or at least one group -- NON-LTS. Anyone who doesn't wish to have us old-timers harsh their buzz could be added to the NON-LTS group and never see this forum again.

I'd love to be in a NO-AMI? group so I'd never see another Am I Infested? post again.

Member Groups are not exclusive and a person can belong to several groups although I'm not advocating such extensive changes. If groups were created simply to remove a forum from someone's view it wouldn't be too difficult to maintain -- offhand there could be NO-AMI? (I DEMAND to be first in that group), NO-LTS, and maybe even a NO-YY to keep XYs from veering into the Poz Women forum.

Just for fun I installed SMF on a website I own and invite you to join so I can figure out how much hot air I'm full of:

You don't have to use a real email address because registration is automatic. When I get bored with this I'll delete the SMF installation altogether. I can't see how to easily allow new members to define the member group(s) they'd belong in so by default all new users have access to all boards. Short of providing a poll or something like that it appears it would have to be done case by case or only as necessary...

Thanks!

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String up every aristocrat!Out with the priests and let them live on their fat!

killfoile, I have to say your words were beautiful and echoed the haunts of my life. I could have not put it better. I was diagnosed march 13, 1991 and have seen horrors and sadness incomprehensible to most others.Thank you, you are what i hoped to find on this forum when i joined today. You have restored some hope that i was losing in my fight with this damn disease. I look forward to further post from you my friend. Keep up the good fight